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Bone mets - please join in

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Bone mets - please join in

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x

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Ok girls....Google Maggie soterro...gown is called emma....she is adding cap sleeves and dress is changed to button back all the way down the train....and a bling belt...fiance is captain in the army..so will be wearing dress blues......the church...St Cornelius the Centrion at Valley Forge Military Academy...reception The Joseph Ambler Inn in North Wales, PA ..have fun googling! Funnyface

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Hope the waiting is not too stressful Chocs.
Ladies I hope you all got the flyer from one of Helen's OH's, Bear. He will kindly be conducting a tour of the cafe garden, very early tomorrow morning. "Greet the dawn chorus with Bear Grylls." Personally I think the list of essentials is a little OTT but, thick socks, sturdy shoes, note to Marie, kitten heels are not sturdy shoes, supplies, ginger beer, lashings of it, hard boiled egg sandwiches wrapped in grease proof paper.
On returning to the cafe a full English, tea, coffee, croissants, Danish are all available to purchase. Remember to use your loyalty card every time you purchase, points mean prizes! X
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Oh my - I'm away for a couple of days and then walk into a wonderful coffee shop with the best waiters ever - sorry and of course you wonderful ladies (I'm determined not to note marie - is that really a skirt!!!). What a fantastic way to spend the afternoon. I've just put on my Disney movie greatest hits - (didn't realise Helen was so out of tune but please don't tell her - she's having such a great time). It's so good to catch up with you all again.
Like you all my children are my trigger button - I'm finding it increasingly difficult to talk about the future with them. I usually end up going to another room after those conversations to have a good cry. It's the most difficult part I find of this horrid disease.
Lynn - fab news you've seen your grand child - so so happy for you. Here's to many more meetings and a cuddle very soon xx
Funny face - we do need to discuss every aspect of the wedding so please fill us in - if you're short of organisers I'm sure us ladies could arrange the whole thing for you - would certainly be very different!!!!

I've survived my tests - was told yesterday initial results look promising but he will confirm in two weeks. I'll take that - better than being told immediately it has spread. Now I'm hoping that just another side effect of the meds. As I was sedated yesterday I've spent the day on the sofa but I feel I'm pushing my luck now. So best get on with some chores.
And just noticed parking attendant looking at blue badge. Better get a move on (remembering to limp to look really poorly as why else would you have a blue badge??!!!!!!!!!! as some people are asked)

Thanks for your support ladies and sending all of you a very big hug. You're all so so special to me xxxx
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Lynn,I bet it was exciting seeing your grandson,the peek a boo made me smile from ear to ear😀xxxx

So glad you had a fab time. I'd get thrown out as I'd be singing at the top of voice lol🎤🎼

Janette,I'll send a hubby to do your physio !! Just choose xx

Marie,or nurse Windsor ,yes,that uniform is a bit short !!!! My hubbies can't concentrate on their job every time your napkin "falls" on the floor and you bend to pick it up!!!!

Belinda,I'm colouring in the corner ,lovely and peaceful,sun warming me and flowers smelling beautiful all different colours. The early clematis is stunning. 🌸🌸🌸The birds are all singing,oh I could stay here all day.

Just having a bite of cheese toastie and a nice cuppa while waiting for you all.

Chocolate ❤️See you soon.
Huge sunny hugs,Helen xxxxx
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Hi ladies,

Ooh a coffee shop what a fab idea, as long as there are big fat cakes to accompany my coffee I'm a happy lady!!

Hi Lynn, you still suffering with your shoulder/ arm?? Mine isn't much better either, I was hoping the cortisone injection I had would have sorted it but it hasn't, I went for my zoladex yesterday and was telling my GP and he said it can take a good week or so to take effect he also referred me for physio but god knows how long that will take! He also said these rotator cuff injuries can take up to a year to go.....oh what joy!!!

 

Chocolates, how are you??? Hope you're okay. 

Hope you all have a lovely weekend 

Hugs Janette xxxxxxx 

 

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Hi everyone I for one will definately be visiting the coffee shop. I only have 1 cup of regular coffee a day since I am not a good sleeper, but I know the decaff will be available. Mine is a cappucino with a toasted ham and cheese panini.

Met my Gson yesterday but he was very wary, I didn't approach him he is still bonding with mum and dad.....but by the time i left we were playing peek a boo from opposite sides of the room and he gave me a smile.....
Disney on ice was brilliant with my youngest granddaughter and her mum - my daughter.

She has been for genetic investigation and they have placed her in the -moderate risk of breast cancer category - she will have a mammogram every year now - they are also going to discuss preventative Tamoxofin with her, but she has said thst she doesn't think she will go down that road.
I have asked if I can have the BRCA blood test but haven't heard yet so will have to see.

Off to see the physio today about my shoulder pain, decided to go private since NHS can't see me for a while - am now receiving PIP so thst is what it's for isn't it.

Hope everyone is well, i seem to have nattered on about me a lot lately...but only on here not to my family!!!!!

Thsnks for listening.....
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About to go back on duty, thanks for the shawl Belinda. However must say this uniform is a bit short and tight even for me ! Will meet you later in the sbc cafe . That is the Seriously Beautiful Coffee Cafe .

Take care Nurse Windsor

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Hi everyone just to say reading your post really make me laugh! Maintaining a sense of humour  despite  everything , thanks girls xxx

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Oh a crafting area, lovely! Love the outdoor garden too, the clematis covered walls are stunning.
I did wonder about the Babs Windsor outfit, with those high heels, hardly practical? Quickly knitting a homely shawl to drape over Nurse Bab's shoulders!
X
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Nicky xxxx❤️❤️

Oh,a coffee shop. That's a great idea. Yes,all my hubbies will be serving us in their starched aprons
🍰🍮🍩🍪

Mr Hollywood will be baking everything.

Belinda,ive just passed my blue badge to Chocolate (shhhh don't tell anyone)

Marie will you please cover up the Barbara uniform,hubbies are getting flustered and serving iced buns with cherries on the top instead of our orders!📈🍰

We have a lovely outdoor space we can use as it's always sunny,but not too hot and filled with flowers ☀️🌺🌻💐🌸🌷🌞

Belinda,I've set aside a space for knitting and colouring in.
Now,Marie please stop writing your phone number on my hubbies apron,tut tut. Chocolate has just made those aprons.
Huge sunny hugs, Helen xxxxx

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Good morning everyone
Nobody's upset me in the least - any comments are welcomed as we are all going through this together and can empathise so much. By sharing both good and bad news as well as our feelings, it only strengthens our cyber family friendships. If my daughter ever decides to get married you'll be the first to know - yesterday she was asked to be a bridesmaid yet again next year, so I'm ruling out 2016. Made my hubby laugh when I said I hope she'll get married before I pop off, as the chances are so slim - I've no intention of going anywhere yet, but they've no intention of getting engaged either, living in sin suits them both too well unfortunately and they've got more important things to waste their money on!
Ooh a coffee shop. As I never drink anything hot, I'm having a nice fresh orange drink with a pan au raisin and I'll look forward to being with you all. I'm going to park on the double yellow lines like Chocs and proudly flash my blue badge!!
Have as good a day as you can
Love to all
LD x
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Oh a cyber Coffee Shop!
Helen's many husbands have their bestest aprons on to wait at our tables. Cappuccinos have to come with Choc au pains. Danish and a great range of teas available along with full English, eggs, fluffy scrambled, daintily poached. Oops please could someone tell Chocs she cannot abandon her car on those double yellows.
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Hi ladies
All of this strikes such a chord with me, and I'm sure all of us with children of whatever age. The sadness for my two beautiful daughters, 24 and 26 by the way, and my Oh is unbearable and I do have to just shove it to the back of my mind as my coping mechanism. I do agree with Marie that I am so grateful for the time we have had together although I'm sure it will never be long enough 😞 We did, as family, have to face the D word two years ago when I was so ill from my two conditions ie heart and cancer, and had just been told I couldn't have the treatment I should have had ie Herceptin. I really thought I had weeks if not months to live so had to face the hard facts. It was very upsetting for us all, and wider family and some close friends to have those discussions but, having said that it has, and did help. The D word is no longer the one we can't mention and I think all of us now face the fact that I will die of cancer - but just hope it's not right now! What was upsetting was one of my daughters almost matter of factly saying it (cancer) had been part of her life since she was 11 so she was used to it! How sad to have grown up with that hanging over you?
Anyway on a positive note both my Ds took me out for a late Mothers Day treat yesterday, to a lovely restaurant for lunch and then we did a bit of shopping together afterwards 🙂 We had a lovely day and I cherish every moment. On that note I of course want to hear all about FFs wedding, or her daughters should I say, and Helens sons 21st. I didn't think I'd live to see the day both Ds got to 21 but I did and grateful I was there.
Have a lovely weekend ladies, whatever life is throwing at you right now and this is such a good place to come and share our thoughts. Now, where are those husbands of yours Helen, are their aprons up to standard?
Nicky x
Ps just seen Marie's post which went on as I was typing. Maybe we should start a coffee shop thread like Belinda did for Christmas as a drop in place? Will leave it to you guys. Mine's a tea with a Danish this time in the morning 😉

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I hope I haven't upset anyone. I feel this forum is our own special coffee shop. We may live miles apart , but we can meet up in the best coffee shop in cyber space to cry , moan ,,laugh and learn. Belinda's just bringing over the cappuccinos , Helen is making me laugh and Chocolates is parking her car outside. Hope you all will be dropping in later xxx M
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Oh,funny face,please NEVER think you can't share good news with us.
We ALL love to hear good news It gives us hope.
We do discuss the Good,the bad and the ugly on here which as times we need to.
Please never think you can't.
We want to hear all the details of wedding and Lynn we want to hear about your new cutie grandson.
Hugs,Helen xxxxxx
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Oh funnyface, it's such GREAT news you have a wedding to look forward to! It's good to share the good stuff and it's good we are able to discuss the sad parts of our lives here too. Take care. X
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Oh my, I'm not sure if I should be sad or not about talking about my family and then everyone talking about their worries. I'm sorry if anyone is too upset. Funnyface

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Janette I agree. Lyn how exciting , meeting your new grandson.
One of my coping strategies is knowing that I would rather have this ******illness than my children. .I am also extremely grateful for the years we have had. I have friends who unfortunately died when their children were very small. As the song says to love and be loved is the greatest gift of all.
Now ladies hope you all have a good weekend . Marie xxx
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Janette you haven't offended anybody xxx
I think our children are our Achillies heel.
When ever a nurse asked me if I have children I always cry. It's like being punched in your heart.

Belinda,I feel guilty he doesn't have any siblings to share his fears with too.
Unfortunately it took us 10 years to have him and I love him to the moon and back. Yes,that book got read every night to him. I always cried saying the last words and he'd ask why do you cry mum? They are happy tears as I love you to the moon and back was my answer.
I've bought him a little metal key fob which has " love you to moon and back" engraved on It,it can go on his birthday car keys. A bit of me with him.
I've made a scrap book of our last Disney family holiday for him and real hubby. I'm not sure about a memory box.

Lynn, you haven't said too much or the wrong thing xxx

Have a wonderful time with your new grandson and give him a cuddle from all of us xxxxxxxx

I love this forum as we can be honest with each other as we know how hard the emotional impact on our families and ourselves can be.
I think we all try to get on with our lives. Some days you can file C away and make memories . On the days I cant I know I can come on here and cry on a cyber friends shoulder and know you'll understand xxx

Huge hugs to mums,grandmas,babies and babies in double figures,Helen xxxxxx
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I've been pleased this thread has been used as an outlet for feelings and fears. We sound, sorry sweeping statement, as though we all try to keep a lid on things for most of the time. Nice to feel we can share here. I haven't prepared any letters for a memory box, the one thing I do try and do is either knit something, sew something, cross stitch something for my family. I like to think little bits and pieces I've made (they are not very beautiful, I have enthusiasism but no great talent) will be around after I've gone. A dear friend I knew in "real life" jennywren who used to post here often sent me lovely little books and other things she'd made in the post and I treasure them.
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Good afternoon all you lovely ladies...have just been catching up with the threads about children and wanted to join the clan. Since my 3rd diagnosis i have pretty much fallen apart. Went for a second opinion on Tuesday which really hit home with my husband. My daughter is my only child and is 23 but there is never an age when they stop being your baby is there? I feel guilty that she has no siblings to share the burden with and  gulity because i am not going to be around when she needs me most..wedding, children etc. It breaks my heart so much sometimes i can barely function. I keep trying to tell myself to take each day as it comes, as i tell others, biut i am finding it increasingly hard especially at the moment nothong seems to be keeping this **** in check. sorry to  put a downer on things butfind it helps to rant to others who really understand. Hopeyou all have agood weekend.x

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I am more worried about leaving my sons (28 and 23) than my husband! And I want to see how their careers develop, whether they marry or not (both have girlfriends who live on other continents), whether they have children .. etc. etc. My parents lived until their late 80s/early 90s so I had always expected that to be the likelihood for me. If there was a heaven, they'd be annoyed that I was meeting them again so soon! 

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Hi ladies, it is so good to have this forum for us ladies to spill out our worries, emotions and fear.

I have never spoke to my husband or children about the D word, its not that we are walking on egg shells around it or or buying or heads in the sand but I chose to deal with this disease on a day to day basis.

Come on lovely ladies the sun is shining we are here, life is for living and I am going to do my damn best to enjoy it and not let this ugly, cruel disease rule my life!

 

Hope I have not offended anyone with my post, just want us all to be happy 🙂

Hugs Janette xxxxxxx 

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Chocolates, thinking of you having your tests and hoping everything goes well x
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I know how you all feel. My children are 45, 42 and 31 and I have 4 granddaughters aged 15, 11, 6 and 3....and a grandson aged 14 months who I am going to meet for the first time today....he is being adopted by them. I try to plan nice things for us all, and love to get them all together.
They ask how I am and I always say that I am fine.
My husband is my rock, we have been
Married for 47 years....i think that we all have feelings of despair but as Edwina says we should try to take each day as it comes.
I remember when my beloved granny died, and she knew it was happening and she said 'it's not the dying that I mind, it's what I am leaving behind'. Love her, our mum died when we were very young and she took over.
Sorry if I've said too much, don't want to say the wrong thing.

Off to see Disney on Ice this afternoon with my daughter and her little girl and meet my grandson who is staying home with daddy.
Xx
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Hallo, I've been having a mini break from the forum as I do try to forget about cancer sometimes but like everyone, my adored sons are the one thing that makes me just incredibly and deeply sad. I just hate all my friends who are seeing their children married and with grandchildren, I desperately want to know how the story of their lives unfolds. I never say this to them though because I don't want them to feel pressurised or guilty!!
Thinking of everyone with children in their 20's, grown up but still our babies xx
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My children are now 40 and 43 and it really doesnt get any easier. We just dont talk about it, which I guess is wrong, but I am scared of us all getting upset. First diagnosed with primaries in 2000 so they have lived with this so long. I was 46 when my mum died and i felt I had been shortchanged. Actually feel bitter towards people who can plan ahead. Does anyone else get these feelings of total despair? Love Ruth x
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Good morning all, I think, to function anywhere near normally we all put these feelings, of sorrow, to one side for so long until they spill out, sometimes when least expected? Like you Helen my daughter has no siblings, I wish she had.
It is the guilt too isn't it? My dear OH and daughter have been living with this big black cancer cloud for such a long while now. Part of me thinks it would be easier for my family not to prolong it all. They all disagree but sometimes I feel it might be best.
I also find myself getting envious of others now, as my mobility has decreased having someone, usually older stride past me down the supermarket aisle I can't help thinking oh you're so lucky. Very silly of me I know. I know nothing about them. And I always wanted to be one of those people who when they died everyone said she never once complained...but I'm not. X
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ditto Janette, my babies are 26 and 23 too . I am just unable to think about it. I hold on to the fact that they are the best thing that happened to me . Marie xxx

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Awww ditto Helen, the thought of leaving my babies (23 & 26) tares me apart!!! We are so close and are best friends.....its heartbreaking 😞
hugs Janette x x
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Hi Helen thanks for the advice I am on ee and I know this effects liver and i did have hepatitis  years ago but onc didn't really take any noticeof that although it is mentioned in the se. I think i will ring my breast nurse today.. a good idea thanks. I know my oh will be fine but it would just be  great for him to have something nice for a change, he is looking after his 88 yr old Mum and 79 year old Auntie  and me so many hosp trips lately! Reading how you feel about your son I can sympathise,  my daughter rings me at least twice a day , used to be three! We are close but I have a dear Sister she is close to and lives near, It is a great comfort to me knowing they help eachother and she will be there when I'm not ....anyway thinking too far ahead should be taking each day at a time right?

 

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Thank you ladies xxxxxxx Belinda ,I think exactly the same as you as I'm very close to my son and he comes to me with problems and worries. I worry about him having no brothers or sisters to talk to and hasn't told any of his friends either.

When I was discussing my prognosis with macmillian nurse (as we know is pants now.) She asked me if I was scared of dying or scared for the things that I'll miss out on.
And yes,it's the things I'll miss that plays on my mind and terrifies me. I have asked him to promise to take any grandchildren to Disney.( dad will pay lol)
Huge hugs ,Helen xxxxx
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Hi,Edwina, please never apologise,we all understand you are not complaining,you are asking for advice xxxxxx.
you do need to call ward if you have a high temp as you may need antibiotics. But sooner rather than later. Are you on the EE combination as that has some nasty SEs. Or are you on capecitabine.
You certainly are not spoiling OHs holiday as he will want his wife well and that will be first on his mind.
Huge hugs,Helen xxxxxx
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Hi everyone,  sorry can't seem to get to the treatment thread not sure if this is where this question should be . but feeling lousy at the moment and need a bit of advice. I am feeling sick and exhausted, with high temp.  onc said my liver function was not quite right after latest blood test and has cut the dose of my pills. I guess this is why I feel like this but I am supposed to be going on holiday in a week's time , typical!  Anyone had this? Stopped my pills for a few days any idea if I will improve soon? My oh is so looking forward to the holiday , sorry to complain as I know lots of you have a lot worse. My oh is so wonderful to me I really don't want to spoil his holiday .

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It's so hard - I can't think of my daughter in the future without turning into a blubbering wreck x
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Oh Helen and Belinda this is the true pain that dare not speak its name .
Sending everyone my love and understanding. Marie xxx
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Oh Helen there are no words. My daughter always comes to me first if she has any worries, she did today and I'm thinking who will she speak to when I'm not around? Not easy. I do feel here, thank goodness, everyone understands though. X
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Belinda ,thank you . Yes,he's 21 but still my baby.👶 I think it's the thought of not being there to see him marry or have children that breaks my heart so much. 💔But at least I'll see this special birthday with him. Yes,three glasses sounds good lol.🍸🍸🍸 hee hee.
He went with his dad (real hubby number 1) to pick a car yesterday.
Xxxxxxx

Marie,there will be no Barbara Windson uniforms,tut tut. We are now married in a quicky ceremony we had this afternoon. All my other hubbies were bridesmaids with matching aprons. 💏💍.

Lynn,I sympathise with you and pain as it wears you down so much xxxxx

Well I'm off to sleep ladies as shattered. One good thing the concoction of drugs I'm on knock me out,shame they don't work on pain. Huge hugs,Helen xxxxx
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Ah Happy Birthday to your son Helen, for some reason I thought he was mid teens, whoo 21 ! 🙂
Enjoy the happy day and have a glass or three. X
Hope everyone has a peaceful weekend...Thursday and somehow I've got into weekend mode. 🙂 x
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Hello everyone, it's been a busy day on here hasn't it?
Welcome Tricia.. How awful that they haven't told you where your secondaries are, they were a bit vague with me when they first told me I had spread, but they did indicate the area...we never get used to the waiting game.
Funnyface my youngest son gets married on the same day as your daughter. I am hoping to lose a little weight before looking for a new outfit, i know exactly what I would like so perhaps I should also think of having something made...I remember last year saying that I just hoped that I could dance at his wedding.
Janette have a brilliant time in New York, the two weeks will fly by I hope and the time away will seem like ages.
Helen hope the ONC at the Freeman uses some authority and gets you sorted...someone needs a kick..

I am feeling a bit better today had a few days feeling down with awful shoulder and neck pain but the stronger pain killers are kicking in now, it's a trapped nerve and slthough it is painful I prefer that diagnosis to the one which I was scared of getting!
Hope everyone else is as well as possible..take care

Xx
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Oh,Belinda ,that's him. I better get a ring on my finger before Marie sets her naughty eyes on him. 👰💍 lol.
There will be no bed baths for my new hubby from Marie in her matron outfit .lol.

No, I haven't been on ketamine,nobody has mentioned it . Not sure what it is (I'll google it.) .
The doctor at the Freeman rang to see how I was getting on after rads trial for my SCC . I told him I was in a lot of pain and I'm waiting for CT. Apparently request only went in on Monday after seeing my onc last Thursday,typical !so he's going to chase it up

Oh,Janette,I bet you're soooo excited only two weeks,yippeeeee and I can use more of my strange pictures now🇺🇸✈️🗽🍔💵🚖 to decorate post.
Haven't a clue where they came from. Some upgrade gave me them lol.

Oh,FF,a wedding how fantastic 💒👰❤️💍💎
. I love the comment about raising the perfect man for her about your son,that's lovely for a mum to here.

I've only got one son and he's 21 next Friday,I'm so excited I'll be there to see him celebrate it.🎂. I may even have a glass of bubbly 🍸or two🍸🍸!

Huge hugs,Helen xxxxxxxxx
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Good afternoon Helen, just doing my rounds. How is the pain ?
I have googled Mr Bison , may have to swop Hattie matron uniform , for a Barbara Windsor nurse one . Marie xxx
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Funnyface.....lol i bet my post made you chuckle this morning!! What am i like....i blame the mediation 🙂 wow you have hit some mile stones,well done you. I pray i will see my daughter get married and have a family, shes 23 and has has been with her bf 4yrs but wedding plans as yet.
Well just been to collect my tickets for New York...yipee, 2wks today i will be on that aeroplane!
Hugs Janette x x
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Helen I have been a googling. Is the new husband Yannick Bisson? He's Canadian and was born in 1969. If Marie visits, in her Hattie Jacques uniform, do not leave them alone together. I'm still recovering from the Poldark Carry Ons. X
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Sorry to hear chemo took it's toll FF. I felt very similar on this weekly Paclitaxel I was on. On a break at the moment but fairly shattered. Hope the wedding will help keep you upbeat, so nice to have happy things ahead. X
Sorry to hear pain is still constant Helen. Have they tried Ketamine, it sounds such big guns stuff but a couple of ladies I know were on it for a couple of years. X
Keep in touch Tricia, we are a supportive bunch. X
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Natalie, lol not me getting married .......my daughter......Ive been married 33 years! I'm going for fitting for my dress and her gown! Wedding is Aug 29th. She was 9 when I was dx with bc...and was 19 when I was dx with mets. She is 29 now. I never thought I would get to see her get married. My 20 year m ark for bc will be in Oct. and 10 years for mets in Nov. My next goal is to see a grandchild. She wants to get pregnant next summer so grandchild I hopefully abiut 2 years away. Just hoping I can make that. I have 2 sons but one isn't in a relationship. Seems he wants to stay single. The other one is living with gf, they don't want to get married or have kids. I laugh at them not wanting to get married. He always wanted to get married before, but he always goes with what the girl says!! Funny thing is she told me that she never had the desire to get married and is OK not getting married, but would say yes if he asked. Says I raised the perfect man for her. I'm quite happy with that!  Funnyface

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Supported to say Kaye, stupid predictive text x
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Kanye, your in Wales ? So am I, where are you ? And where you treated x
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Hele so sorry you're still in pain huge hugs to you xx
Tricia sorry you've had to join us but you will get lots of support from the ladies on here they are all amazing and once they get your treatment in place you will feel a bit more positve xx
Hope everyone else is doing ok ,not avery nice day very wet and windy here in Wales.
I'm just off to sit with my mother in law for a few hours.
Take care all
Kaye xxx